Overview
Chaotic conus spinal cord lipoma is a very rare congenital (present at birth) condition in which a fatty mass, called a lipoma, grows within or around the lower end of the spinal cord, specifically in the area known as the conus medullaris. The term 'chaotic' refers to the disorganized way the fatty tissue is mixed in with the nerve tissue, making it especially complex. This type of lipoma is a form of spinal dysraphism, meaning the spine did not close properly during early development in the womb. Because the fatty tissue is tangled with the nerves of the lower spinal cord, it can cause a condition called tethered cord, where the spinal cord is pulled or held in an abnormal position. This tethering can lead to problems with leg movement, bladder and bowel control, and sensation in the lower body. Symptoms may be present at birth or develop gradually as a child grows. Treatment typically involves neurosurgical evaluation and, in many cases, surgery to release the tethered cord and remove as much of the lipoma as safely possible. However, because the fatty tissue is chaotically intertwined with nerve fibers, complete removal is often not possible without risking nerve damage. Ongoing monitoring by a multidisciplinary team is important. The chaotic subtype is considered one of the more surgically challenging forms of spinal cord lipoma.
Key symptoms:
Weakness in the legsDifficulty walking or abnormal gaitLoss of sensation or numbness in the legs or feetBladder control problems such as incontinence or difficulty urinatingBowel control problems such as constipation or incontinenceA visible lump or fatty mass on the lower backSkin changes on the lower back such as a dimple, tuft of hair, or birthmarkFoot deformities such as clubfoot or high archesLeg length differenceBack pain or lower back painScoliosis or curvature of the spineProgressive worsening of symptoms during growth spurts
Sporadic
Usually appears on its own, not inherited from a parent
Neonatal
Begins at or shortly after birth (first 4 weeks)
Treatments
No FDA-approved treatments are currently listed for Chaotic conus spinal cord lipoma.
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Specialists
View all specialists →No specialists are currently listed for Chaotic conus spinal cord lipoma.
Treatment Centers
8 centersBaylor College of Medicine Rare Disease Center ↗
Baylor College of Medicine
📍 Houston, TX
🏥 NORDStanford Medicine Rare Disease Center ↗
Stanford Medicine
📍 Stanford, CA
🔬 UDNNIH Clinical Center Undiagnosed Diseases Program ↗
National Institutes of Health
📍 Bethesda, MD
🔬 UDNUCLA UDN Clinical Site ↗
UCLA Health
📍 Los Angeles, CA
🔬 UDNBaylor College of Medicine UDN Clinical Site ↗
Baylor College of Medicine
📍 Houston, TX
🔬 UDNHarvard/MGH UDN Clinical Site ↗
Massachusetts General Hospital
📍 Boston, MA
🏥 NORDMayo Clinic Center for Individualized Medicine ↗
Mayo Clinic
📍 Rochester, MN
👤 Mayo Clinic Center for Individualized Medicine
🏥 NORDUCLA Rare Disease Day Program ↗
UCLA Health
📍 Los Angeles, CA
Travel Grants
No travel grants are currently matched to Chaotic conus spinal cord lipoma.
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Caregiver Resources
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Social Security Disability
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Questions for your doctor
Bring these to your next appointment
- Q1.What type of spinal cord lipoma does my child have, and how does the chaotic subtype affect treatment options?,Is surgery recommended now, or should we monitor and wait?,What are the risks and benefits of surgery for this specific type of lipoma?,How will we monitor for re-tethering of the spinal cord after surgery?,What bladder and bowel management strategies should we start now?,Will my child need physical therapy, and how often?,What signs should prompt me to seek urgent medical attention?
Common questions about Chaotic conus spinal cord lipoma
What is Chaotic conus spinal cord lipoma?
Chaotic conus spinal cord lipoma is a very rare congenital (present at birth) condition in which a fatty mass, called a lipoma, grows within or around the lower end of the spinal cord, specifically in the area known as the conus medullaris. The term 'chaotic' refers to the disorganized way the fatty tissue is mixed in with the nerve tissue, making it especially complex. This type of lipoma is a form of spinal dysraphism, meaning the spine did not close properly during early development in the womb. Because the fatty tissue is tangled with the nerves of the lower spinal cord, it can cause a co
How is Chaotic conus spinal cord lipoma inherited?
Chaotic conus spinal cord lipoma follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does Chaotic conus spinal cord lipoma typically begin?
Typical onset of Chaotic conus spinal cord lipoma is neonatal. Age of onset can vary across affected individuals.